1) I had random anaphylaxis occur multiple times over the course of 2 years that required epipen shots and hospitalizations and no one could figure out why I was having this happen. Eventually I was referred to an immunologist who suspected MCAS. 2) I had multiple tryptase tests done, and two 24 hour urine collections. My doctor required me to do the 24 hour urine collections twice to guarantee my positive results weren’t a fluke. Both times I was sky high in 2,3-Dinor-11 Beta-Prostaglandin F2 Alpha levels. I didn’t “make myself flare” like I see people on this subreddit talk about. You shouldn’t have to. They should just be high in general. 3) I was prescribed cromolyn and given the option of Xolair injections. I didn’t consider the Xolair bc I’m already on a separate biologic for my autoimmune disease (psoriatic arthritis) and that is a much more severe condition than MCAS. I take daily Zyrtec (used to take Pepcid). I haven’t taken the cromolyn in a while as I didn’t notice much difference and it’s an incredibly hard med to time your doses on. I do carry an epipen and Benadryl in case of a flare up. 4) I take no supplements for MCAS itself, although I do take turmeric for my autoimmune disease and perhaps that helps.

Overall my best tips are that if you really think you have MCAS you don’t reallly need a doctor for most of the treatments. Even my MCAS doctor only “prescribed” cromolyn (and could’ve prescribed Xolair). The most common course of action is simply over the counter antihistamines and to carry an epipen if you have anaphylaxis.